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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Swollen hands

Dainty

Senior Member
Messages
1,751
Location
Seattle
As far as allergy, you might be right. The thing is that I didn't start eating anything new but, it is possible that I developed a new allergy to something I have been eating all along?

Yes, this has happened on numerous occasions with me, and it is what happened with the Benedryl. I wasn't always allergic to it. It was only after I began taking it on a regular basis after I became severe that I gradually developed an anaphylactic reaction to it.

It's happened with foods, it's happene with supplements, and it happened with wool. All things that were fine at one time for me, but my body developed an allergic reaction to.

Definitely possible.
 

Shell

Senior Member
Messages
477
Location
England
Hope the ice water helped a little.
I wear those pressure gloves for arthritis which helps reduce the swelling a little, but I am sure mine is due to fluid whereas it sounds much more likely you are reacting to something - especially with the swollen lips.

My GP sent me for tests for Rheumi Arthritis because of my swollen hands (which was negative) so it might be worth asking for that test - but RA doesn't cause swollen lips.

I would check out even the "very rare" side effects of whatever you're taking and consider any herbal stuff too?

I hope you find an answer soon.
 

K2 for Hope

ALways Hoping
Messages
271
Location
Jacksonville, FL 32258
Neilk:

I have arthritis so I know this could be a symptom, but it usually flares in the winter or in cold, rainy weather, not in the summer.

My symptoms remain in my joints. My knuckles and knees are swollen and my bones hurt. I've also been trying to move a lot to see if that helps. (Movement is supposed to "lubricate" the joints.)

I cannot take NSAID's (Ibuprofen, Aleve, Celebrex, etc) and I'm sure Torador would not be advisable as I now also have Chronic Kidney Disease and alot of meds are now "off limit".

I am also detoxing from benzos, very slowly, so, I find it interesting that there is that similarity.

I cannot think of anything else I've changed in my routine except adding LDN which is supposed to help.

I'm taking Curcumin, but supposed to take 3 tabs a day and cannot afford it, so am only taking one. I think I'll go ahead and increase to the amount required as I'm hurting enough...

Will be trying some Wobenzym PS (Professional Strength) my Internist (turned holistic Dr) gave me. They cost $65 for 180 and I think I'm supposed to take 3 tabs/day and work up to 6 tabs/day. That is a supplement prescribed specifically for arthritis/inflamation.

I'm concerned for you due to the lips swelling. That is not a typical arthritis symptom and, I thought, was specifically an allergic reaction to something that should be of concern.

Please keep us posted as to your Dr's appts. I will let you know if the increase in Curcumin or the starting of Wobenzym PS helps with my inflamation.

Karen
 

Nielk

Senior Member
Messages
6,970
Thanks all for your advice and concern.

So far, I have taken Celebrex for 5 days with no improvement so I stopped taking it. The Rheumatologist took blood work to test for RA. I didn't get the results yet.

I went to a Neurologist on Friday and he took a nerve conductivity test on my legs which showed that I have nerve damage in each leg.

He also referred me for an MRI for the brain and neck which I just came back from. I will probably get the results in a couple of days.

I don't know if I mentioned that in addition I have been having pain in my neck which has not been relieved by Physical and water therapy. I also have a feeling of tremendous "heaviness" - like I'm made out of lead and it's sooo hard to move any part of my body.

All these strange symptoms are very confusing, especially since they all started about 10 weeks ago and have been progressively getting worse.

The problem that the neurologist found in my legs was surprising. I had no reaction at all to the electrical stimulus in one nerve in each leg. The doctor was saying that he sees this in Diabetic patients but, I don't have any problem with glucose.

I hope that these symptoms just disappear the way they came or that I can get an answer to what's happening to me.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The tremendous heaviness and feeling like heavily weighted down.. that is what I call ME fatigue too (its completely different to my POTS fatigue).

Nielk.. I strongly suggest to see if your doctor will send you to an allergist as allergies esp since you already seem to be having a severe reaction can get serious real fast.

It isnt uncommon to suddenly develop new allergies with ME. I late last year/early this year read of someone who had ME who died after a strange sudden severe allergic reaction.. its extremely important to get worked out as ASAP what is going on.

Also Im wondering if it is your newer med(s) causing the response. Maybe it would be a good idea to see if you can take something else instead to make sure it isnt even if you have to go back on the Benedryl for a week just to make sure it isnt the other med doing this to you.

Im quite worried about how your doctor has sent you to a rheumologist when you are also getting your lip swelling.... get your doctor to also send you to an allergist.

ps you arent washing your hair regularly with a different shampoo/conditioner? I understand you probably arent washing your hair much at all but thought I'd throw that idea out there just in case.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
I don't know if I mentioned that in addition I have been having pain in my neck which has not been relieved by Physical and water therapy. I also have a feeling of tremendous "heaviness" - like I'm made out of lead and it's sooo hard to move any part of my body.

All these strange symptoms are very confusing, especially since they all started about 10 weeks ago and have been progressively getting worse.

The problem that the neurologist found in my legs was surprising. I had no reaction at all to the electrical stimulus in one nerve in each leg. The doctor was saying that he sees this in Diabetic patients but, I don't have any problem with glucose.

I hope that these symptoms just disappear the way they came or that I can get an answer to what's happening to me.

A D.O. specializing in Neuromusculoskeletal Medicine - that is, a cranial osteopath - would be able to diagnose precisely what is happening in your neck by a gentle examination, inform you of any structural issues that could be causing or contributing to the nerve damage in your legs and provide you with a treatment that, at the very least, ought to give you some measure of immediate relief for your neck. All within the first appointment. S/he may also inform you of things you can do at home to help relieve it. Let me know if you want me to try to look up a good one for you..I'm getting lots of practice!

It may not be the answer to your swelling, but there's a chance that it could be and if so the osteo would tell you. And if nothing else at least you'd at least have one issue properly evaluated and addressed with all the guesswork taken out of it. In my book that's worth a lot. :)
 

Nielk

Senior Member
Messages
6,970
Can anyone explain why my hands are so swollen and painful? I don't have arthritis and my doctors are stumped.



swollen%20hands.jpg
 

Nielk

Senior Member
Messages
6,970
Ocean - I don't think it is hae since it seems that hae starts in youth and it comes with attacks of a few day. Mine started almost 6 months ago and it is constant.

nanonug - I take Zyrtec every day and Advil. It doesn't help.

Thanks though.:)
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Here's something from the Mayo Clinic: Edema - causes. Have you had a CBC w/ Metabolic Panel recently? If not, it's probably a good idea to have one now.

A leukotrine D4 inhibitor such as Singulair might also be useful but needs a prescription.
 

Nielk

Senior Member
Messages
6,970
Here's something from the Mayo Clinic: Edema - causes. Have you had a CBC w/ Metabolic Panel recently? If not, it's probably a good idea to have one now.

A leukotrine D4 inhibitor such as Singulair might also be useful but needs a prescription.

nanonug - thanks for your help with this.

I had bloodwork done by my GP and everything, including CBC w/Metabolic panel came back normal except
Vitamin D was low -26 (30-100)
Hemoglobin A1C was high - 6.3 (6.1 - .6.4 higher risk of diabetes)
CK total 28 (29-143)

Besides the swelling and pain in my hands, I have swelling in my trunk and neck. What is really strange to me is that this all started almost six months ago when I was detoxed off Klonopin use of 7 years. It progressively worsened and now is just staying at this uncomfortable, painful level. I pretty much know of all the possible withdrawal effects of Benzodiazepines and didn't hear of this. The Doctors don't seem to think that there is a connection, but Doctors in general don't know much about withdrawal effects.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Vitamin D was low -26 (30-100)
Hemoglobin A1C was high - 6.3 (6.1 - .6.4 higher risk of diabetes)
CK total 28 (29-143)

Are you taking steps to correct the first two, namely, Vit D and HbA1C?

Low values of CK could be associated with rheumatoid arthritis. Of course, rheumatoid arthritis is one manifestation of mast cell activation disorder. See this abstract, for example:

Mast cells in rheumatoid arthritis

Abstract

Rheumatoid arthritis (RA) is a chronic disease of joints that is characterized by inflammation, abnormal cellular and humoral immune responses, and synovial hyperplasia. Mast cells (MCs) are involved in several of these inflammatory and immune events. MC-derived mediators induce edema, destroy connective tissue, and are involved in lymphocyte chemotaxis and infiltration and in pathological fibrosis of RA joints. Moreover, MCs are involved in angiogenesis during RA, and their proteolytic activity results in cartilage destruction and bone remodeling. Lastly, MCs could be a target in the treatment of RA.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Ocean - I don't think it is hae since it seems that hae starts in youth and it comes with attacks of a few day. Mine started almost 6 months ago and it is constant.

nanonug - I take Zyrtec every day and Advil. It doesn't help.

Thanks though.:)
Angioedema is the first thing I thought, but I really don't know. I hope you find out soon or it goes away or both!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
sorry to hear that your issue is still going on and in other places too.. that must be such a worry. Really hoping it will go away like mine did. I wish I'd had a camera back then and had taken photos of the swelling I got in my hand so I could of shared. it was like the swelling in your photo but maybe my fingers were too just a little more (unless we are cant see them well by the photo but the back of mine hand was like yours is in that area there).
 

Nielk

Senior Member
Messages
6,970
Thanks Tania. How long did yours last and were you able to attribute it to anything?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Could it be a side effect of the drug they gave you to get off the klonopin?

I'm not sure about the swelling, but pain could certainly be related to the very low vitamin D level. Hope you find some answers soon...